Am I really bi-polar?

[ElitaSue]

Hello,

I am new to this community - don't really know the in's and out's, but I will share a little about my story. I was "labeled" bi-polar about 23 years ago. I have gone through all the litany of meds. 16 years of daily 1800 mm of Lithium, then the neuroleptics, anticonvulsents (docs really never would let me have any anti-depressants). I have tried them all, and nothing seemed to help, except Lamotrigine - that was a miracle drug for me. Oh yea, and to top it all off - I drowned it all out with alcohol and drugs.

Now I have been a recovered alcoholic (very gratefully so) going on 5 years now. I sobered up four months after starting Lamotrigine, so grateful for that drug, and it has been the only bipolar med I have taken over the last few years.

More of the story now. A couple of years into my sobriety, I started noticing a connection to when I had "panic attacks" and big wonderful sugary chocolate donuts (just love those), about half hour after I would eat them, huge, huge panic, anger attack. For years I had taken Risperdal to help with panic, but this time I was pretty much med free and just waiting them out. I was big into meditation and had learned to really watch what my mind was doing, was it psychological or was it physical? I spent $120 and bought a glucose meter, I have heard in AA many of us were hypoglycemic. Sure enough, next time I had one I checked my blood sugar, my sugar was 40! All of those years I was having what I believe to be complex partial seizure's (or complex partial panic attacks as I would like to call them) as a result of low blood sugar, not a panic attack at all. The Lamotrigine was helping to control the seizures.

More of the story. I was no longer seeing a Psychiatrist or a Psychologist (after 14 years of once a week therapy), but I did have an awesome GP who prescribed my Lamotrigine (she is just a God send to me). I showed her my glucose numbers - and they were just weird (she did all the tests she could and I was an enigma to her) - she sent me to a Endocrinologist.

The Endocrinologist told me right off the bat - you have Celiac's disease and reactive hypoglycemia, I was deficient in all sorts of vitamins and minerals. He put me on a strict no-grain, no-sugar diet, which I have followed religiously for nearly nine months now, and been doing the vitamin, mineral, essential fatty acid supplementation.

I am not "crazy" anymore (I don't have mood swings and weird stuff). I do still take my Lamotrigine, and my GP still thinks I am a bi-polar - it is the diagnosis de-jour now (but she said last appointment when she wrote me out a script for a year "I don't know what you were like before but you are the most stable bipolar person I have ever known" (that had to have been the best compliment I have ever received). I am more inclined to think that I am a Temporal Lobe Epileptic with Celiacs disease (the Endocrinologist agreed about the seizures).

I don't know - I see many of my friends that have "bi-polar" and they are on six to seven different meds. I take one. Plus I have tardive dyskenesia from the years on the neuro's (it is kinda like the mental illness boobie prize). LOL

But I do okay - am I really bi-polar? There is so much more to my story, and trying to keep this short of a full-on essay I will stop.

Thanks a bunch! God bless!
Sue

[David O]

Good morning ElitaSue,

Welcome to the “family”. Given that it’s the holidays, it may be a little slow, but soon others will chime in. From your description, it seems you’ve struggled for many years and the not really knowing does add to the distress.

At this point it seems like you’ve stabilized on the Lamictal, which has some of the more unusual positive “side effects” such as resolving ADHD symptoms while also addressing seizures and Bipolarity. We don’t and can’t diagnose here, it’s hard enough sometimes to do it in person, much less via the internet. Just as discussion point, Celiac’s disease does have behavior changes, especially depression and irritability as markers, but it doesn’t bring about the elevated euphoric mood--- in contrast Temporal Lobe epilepsy can bring about the euphoria, and elevated feelings. Because the Lamictal addresses both Bipolar and Epileptic activity, it’s very hard to tease out.

Out of curiosity, is there particular reason the label is important at this point? If you discovered that it was Bipolar Disorder and it was the accurate diagnosis, would it change your life in any way; conversely, if you discovered that the combination of Celiac’s and Epilepsey was producing your symptoms, how would that change your life? I don’t mean to sound insensitive, but that fact you’ve stabilized and seem to remain so would be my key concern, and the label would be just that, a label. If, on the other hand, you relapse and begin having significant shifts in mood over weeks or months, then you would have to look more carefully at the diagnosis since it’s the Bipolar Disorder that would tend to flare up despite the meds. By the way, did your endocrinologist also place you on any hormones (progesterone in particular) as part of your treatment for epilepsy?

Good luck and I hope this helps.

David

[ElitaSue]

Thanks for responding David. You are very insightful. I am finding that the lines become really blurry in understanding what is what - they still really don't know "what" bipolar is, and I am beginning to realize more now that it is a blend of several physical abnormalities. My body is just different. My endocrinologist hasn't prescribed hormones, I am on the cusp of menopause, but monitors my levels quite closely and to tell you the truth things are good the way they are, I don't want to mess with my hormones. He is keeping an eye on my Cortisone levels, we are watching for Addison's disease.

And the label, oh God how I hate the label - I have been treated so badly carrying this stigma I cannot even tell you. I keep it hidden, only my closest AA friends, and my doctors know. No doubt much of it is my own shame, I am an ACOA (Adult Child of Alcoholics) something I have done a lot of work on - and I am a shame driven person. But people are people, some are very kind, others will be judgmental (like my Endocrinologist told me "we are all crazy").

I will tell you a story about an experience I had. Three years ago I was diagnosed with Spastic Dystonia (Tardive Dyskenesia) of the vocal cords and larynx. My speech sounds so funny and it is difficult for me - I know people have a hard time listening to me. I struggle on despite it, then I began getting botox injections into my vocal cords and my voice became somewhat normal. The way people treated me entirely changed, I was more accepted and people treated me better, and I realized a horrible thing about the way people with disabilities can be treated by others. I know it is out of peoples own insecurities, ignorance and fears that they will treat people who are different from the way they are sometimes badly.

I don't get botox injections any more and just speak funny (I sound like Cathryn Hepburn) with a yoddle in my voice all the time. I have overcome that shame and come to a state of acceptance with it. I actually get asked to speak for AA often.

But, the bipolar diagnosis is much the same thing. I feel it out, some are okay with it, others will have a hard time with it.

Thanks!
Sue